After 30 years of research on health literacy, the problem still has not been solved. Half of U.S. adults have low health literacy. That means, in the simplest case, they do not understand how to read a prescription label or what the dosing means, nor do they know what their cancer treatment is, beyond the most general statement. If they do not understand these things, they certainly do not understand what a research protocol is.
Christine Zarcadoolas, Associate Professor, CUNY School of Public Health at Hunter College and Mount Sinai School of Medicine, defined health literacy as “the wide range of skills and competencies that people develop over their lifetimes to seek out, comprehend, evaluate, and use health information and concepts to make informed choices, reduce health risks, and increase quality of life” (Zarcadoolas et al., 2006).2
The age group with the lowest level of health literacy is those 65 and older. Disproportionate numbers of racial and ethnic minorities and other underserved populations are health illiterate. The problem of health illiteracy is compounded by the high rate of fundamental illiteracy in the U.S. population, with the average American reading at an 8th-grade level. But even if health information is written at a 5thor 8th-grade level and people can read and understand it, if they do not use it and cannot apply it in making decisions, they may not have health literacy. Four types of literacy are fundamental literacy (reading, writing, working with numbers), science literacy, civic literacy, and cultural literacy. The general public often does not have science literacy. Even people who have high fundamental literacy may not take their medications correctly, understand their physiology, take actions to protect their health, or distinguish among health advice based on science, pseudoscience, or hope.
Clear language is necessary but not sufficient to create understanding. Americans generally do not know, or they have great difficulty understanding, the underlying concepts embedded in health informa-
1 This section is based on the presentation by Christina Zarcadoolas, Associate Professor, CUNY School of Public Health at Hunter College and Mount Sinai School of Medicine.
2 An IOM workshop summary report defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker, 2000). However, health literacy goes beyond the individual obtaining information. Health literacy emerges when the expectations, preferences, and skills of individuals seeking health information and services meet the expectations, preferences, and skills of those providing information and services. Health literacy arises from a convergence of education, health services, and social and cultural factors (IOM, 2004).